Alexandria, VA – Eighteen-year-old Alexandra “Zandy” Wong, Alexandria resident and freshman at Johns Hopkins University, was born with a deformed bone in her middle ear.
“Growing up with hearing loss was an isolating experience,” says Alexandra, whose condition is called oval window atresia, which prevents proper processing of vibrations as sound. In Wong’s case, 90 percent of the hearing in her left ear is lost and has been since birth.
“I was in the fray. I was not an active member in class or in conversation.” Wong says she would frequently mistake or completely miss parts of conversations. The sounds of birds chirping or of her hair blowing in the breeze were just murmurs.
But when she was in seventh grade, on April 15, 2015, Alexandra had surgery to receive a Baha Cochlear Implant. “Words cannot describe to you how amazing it is to hear birds chirping for the first time. And my speech quality went from zero to one hundred. It was surreal.”
Alexandra blossomed into an active member of her school and community but still refrained from disclosing her disability. “I defined myself in other ways,” she says, by submersing herself in activities like piano, tennis, and community service throughout high school.
At Hayfield Secondary School, Alexandra was one of five students with hearing loss in a student body of 3,000. She didn’t discuss her disability much but shied away from it.
“Others don’t understand what it’s like being the odd one out after you’ve tried every day to conform to the norm,” she says. Despite wanting to blend in, Alexandra found herself the victim of mockery, laughter, bullying when she had difficulty comprehending group conversations in noisy places.
From Cochlear Recipient to Cochlear Scholar
Today, Alexandra is a neuroscience student and a recipient of the 2021 Cochlear Anders Tjellström Scholarship, named for Dr. Anders Tjellström, who invented the Baha (bone anchored hearing aid) Implant in 1977.
Dr. Tjellström was a research physician in the otolaryngology department at the Sahlgrenska University Hospital in Sweden when he collaborated with Per-Ingvar Brånemark, a pioneer of osseointegration, and Bo Håkansson, to treat the first patient with a Baha device.
The Baha device utilizes the body’s natural ability to conduct sound to skip over the outer and middle ear’s damaged parts, transmitting sound vibrations through the skull to the working inner ear, the cochlea. The Cochlear Baha system offers both a surgical and a non-surgical solution to address conductive hearing loss, mixed hearing loss, and single-sided deafness.
The Anders Tjellström Scholarship is awarded by Cochlear, the global expert in implantable hearing solutions for children and adults. Based on academic achievement, commitment to ideals of leadership and humanity, extracurricular activities, and community involvement, the scholarship gives selected students $2,000 per year for up to four years toward school-related costs.
Of 130 individuals who applied for Cochlear scholarships, only eight were selected: five won the Graeme Clark Scholarship and three won the Anders Tjellström Scholarship, including Alexandra Wong. The winners were announced in February 2021.
The Silence of Sound
Now, because she knows how it feels not to be heard, Alexandra strives to be a role model and support system for others who feel like the “odd one out.” She knows the power of support, thanks to her mentor Dr. Sheila Moore-Neff.
Dr. Moore-Neff is an educational audiologist at Hayfield Secondary. She was also Alexandra’s high school tennis coach. “Zandy had grown comfortable enough with me over time to tell me she had hearing loss,” says Dr. Moore-Neff. “All I knew at that point was that she was a great tennis player, a great leader, and a bright student.”
Upon learning of Alexandra’s disability, Dr. Moore-Neff welcomed her into a support group for hearing loss. She helped Alexandra find local audiologists, secure professional shadowing opportunities, and expand her world. “We continued on that journey through her high school career as she tried to get comfortable with who she was,” Dr. Moore-Neff says.
Because of Dr. Moore-Neff’s support and mentorship, Alexandra eventually wanted to share her story with more students. On November 12, 2020, she gave a TED Talk for TEDxYouth@SilverSpurRd, entitled The Silence of Sound.
Alexandra’s TED Talk confronted the perpetuation of negative stereotypes surrounding disability: “[Negative stereotypes] are spread by the people who choose not to listen even though they fully can. They are spread by the people who see us as just our condition and not as people.
“Discounting people because they have a disability negates their effort, their work to live in an able world. They work just as hard, if not harder, than probably you guys do to live normally in an able world.
“My experience is certainly not unique, nor is it the first or last one to come. But it is relevant for understanding why what’s left unspoken, the silence of sound, somehow reverberates the loudest…I continue to share my story to encourage acceptance of what makes us unique, nothing more, nothing less.”
According to the National Institute on Deafness and Other Communication Disorders (NIDCD), each year two to three out of every 1,000 children are born with hearing loss in the United States. Given a U.S. population of 330 million, that is a significant statistic.
According to the Johns Hopkins Cochlear Center for Hearing and Public Health, support is key for helping almost 40 million people coping with hearing disability and finding closure under uncontrollable circumstances.
“People aren’t defined by their disabilities,” Alexandra says. “They are defined by the actions they take in the context of their disabilities. I didn’t overcome my disability; I overcame the circumstance of what people boxed me into. Someone out there is getting laughed at because of things they can’t control. I don’t want to see someone get hurt because they can’t be themselves. That is why I share my story.”
Through sharing her story, Alexandra has found closure and confidence and has reclaimed her identity. She hopes to help others do the same. Alexandra used to hide her disability. Now, she has received the Anders Tjellström scholarship for representing and supporting those with hearing loss and for her research in auditory neuroscience.
“This scholarship validates the work I have been doing,” she says, “and it gives me the confidence to keep dreaming and keep working towards big, lofty goals.”
Alexandra is currently an intern with The Johns Hopkins University School of Medicine, working to create algorithms that detect specific levels of hearing loss. She volunteers with the Northern Virginia Resource Research Center for Deaf & Hard of Hearing Persons to ensure that deaf and hard-of-hearing individuals across eight counties can access assistive technologies. Alexandra also runs a college essay editing business and a startup, Cognitive, that fuses AI and human support into four chatbot apps that can diagnose and treat nine mental health illnesses. She aspires to one day become an ENT doctor.
What is Cochlear and Why is Johns Hopkins So Important?
Cochlear Limited is a global medical device company specializing in hearing aids and implants. Cochlear Limited headquarters are near Sydney, Australia; Cochlear Americas is in Colorado.
Cochlear Limited was founded in 1981 by Dr. Graeme Clark, who invented the Multiple-Channel Cochlear Implant. A professor of otolaryngology at the University of Melbourne, Dr. Clark is the namesake of the Graeme Clark Scholarship for Cochlear Nucleus Implant recipients.
Today, Cochlear Limited specializes in three devices: the Nucleus Cochlear Implant, the Hybrid Electro-Acoustic Implant, and the Baha Implant, which The Johns Hopkins University School of Medicine offers.
Johns Hopkins is a leader in hearing loss research and hearing aids, with four centers in America: The Johns Hopkins Outpatient Center, Baltimore, MD; The Johns Hopkins Health Care and Surgery Center at Green Spring Station, Lutherville, MD; The Johns Hopkins Bayview Medical Center in Baltimore; and The Johns Hopkins Health Care and Surgery Center in Bethesda, MD.
Johns Hopkins’ staff are specialists in hearing loss research, techniques, devices, and surgeries. The Johns Hopkins University School of medicine supports those with hearing loss and gives students like Alexandra research opportunities and resources.
To locate a Johns Hopkins center or an affiliated patient care center near you, visit www.hopkinsmedicine.org/directions/. To request an appointment with a Hopkins Hearing audiologist, call 443-997-6467. To locate a Cochlear clinic near you, visit www.cochlear.com/us/en/connect/find-a-clinic.